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Topic: 3 year delay in diagnosis

Forum: Less Common Types of Breast Cancer — Meet others with less common forms of breast cancer, such as Medullary carcinoma, Inflammatory breast cancers, Mucinous carcinoma (colloid carcinoma), Paget's disease, Papillary carcinoma, Phyllodes tumor, Tubular carcinomas, Metaplastic tumors, Adenoid cystic carcinomas and Angiosarcoma.

Posted on: Feb 13, 2018 11:58AM

Daniellegrant82 wrote:

does anyone have experience with finding a lump and having several doctors dismiss it for 3 years saying it's some kind of fibroid issue?

At 1 year with the lump (3 doctors dismissing at this point) I began to get really sick. I was unable and still am unable to fight off any infection. My fatigue developed at the 2 year mark as well as digestive issues that sent me to hospital several times (the lump looked at and decided to be nothing). For the past 6 months the agony in my bones keeps me in bed most days.

At 3 years with this lump I finally got a doctor (who still believed it to be a cyst) send me for biopsy from a surgeon who thought it was a cyst only to find out it's tubular ductal invasive carcionma.

Since those results I've been waiting and waiting and waiting for follow up tests to make a full diagnosis. I know nothing beyond what kind of cancer it is.

I'm scared that its spread and I'm not getting answers from this crack team of doctors.

Anyone have a similar case?

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Feb 13, 2018 12:22PM voraciousreader wrote:

danielle....there have been quite a few of us, especially with rare “favorable” types of cancers who were delayed in diagnosed. My mucinous cancer was seen for 3 years on sonograms and dismissed as a cyst. If you want to find out the treatment guidelines for tubular and mucinous breast cancer, register at the NCCN’s website and follow the prompts to the treatment for our special types. I am eight years out from diagnosis. You should do very well! Good luck

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Feb 13, 2018 12:29PM Moderators wrote:

Hi Danielle, and welcome to Breastcancer.org,

We're so sorry to hear of your diagnosis, but we're really glad you found us. As you can already see, our Community is full of very helpful, knowledgeable, and supportive members always willing to share their experience and advice. You're sure to get more responses here soon and develop a great support system!

In the meantime, you may be interested in checking out the main Breastcancer.org site's pages on Tubular Carcinoma of the Breast for information on how it's diagnosed, treatment, and follow-up care.

We hope this helps and we look forward to hearing more from you soon!

--The Mods

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Feb 13, 2018 12:31PM DATNY wrote:

IDC here, grade 1, but Her2+, hormone negative. Missed for at least 3 years. Had very similar symptoms like yours (although never so severe to get me in a hospital), plus breast pain.

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Jan 23, 2020 02:54PM nathaliebananas wrote:

Mayi ask - what stage, what size, what type and grade was your carcinoma? How are you feeling now?

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Jan 23, 2020 02:56PM nathaliebananas wrote:

  • Hello, i have exactly the same - just been diagnosed two days ago. My lump is 1.7cm. how are you feeling now?
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Jan 23, 2020 02:58PM nathaliebananas wrote:

Mayi ask - what stage, what size, what type and grade was your carcinoma? How are you feeling now?

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Jan 23, 2020 03:04PM Moderators wrote:

Hi nathaliebananas, and welcome to Breastcancer.org,

We're so sorry to hear of your diagnosis, but we're really glad you've found our Community. You're sure to find great support here!

Unfortunately, this thread has been quiet for quite a while now. If you'd like to hear from a specific member, we'd suggest sending them a Private Message, as your posts here may go unnoticed.

Or, if you have specific questions our Community can help with, we'd suggest you start your own thread in the Less Common Types of Breast Cancer forum to help you get some answers and advice about your own situation. It's easy to do: just click the link to the forum, select Start a New Topic, fill out the Subject and Body of the post, and click Submit. Don't forget to select the thread as a Favorite, so you can get notifications when someone responds to your post!

Also, don't forget to fill out your Profile so others can see your diagnostic and treatment information, which will help them answer your questions. You can fill out your profile by clicking My Profile at the top right of your screen, and following the prompts to enter your information in the My Diagnoses and My Treatment tabs.

We hope this helps and we look forward to seeing you around the boards!

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